How One Tenacious Task Force Worked to Separate Developmental Trauma Disorder from PTSD in DSM-5

In 2001, the Cummings Foundation convened a group of child psychiatrists, public policy experts, and representatives from the Department of Justice, Department of Health and Human Services, and Congressional staff to consider the deplorable state of services to traumatized children. This initiative led to the establishment of the Congressionally mandated National Child Traumatic Stress Network (NCTSN).

In order to study the symptomatology of the children seen within the NCTSN, Boston psychiatrist and trauma expert Bessel van der Kolk and his colleague Joseph Spinazzola organized a complex trauma task force. Between 2002 and 2003 they conducted a survey (via clinician reports) of 1,700 children receiving trauma-focused treatment and experiencing the effects of child abuse at 38 different centers across the country.

They found more evidence of what two decades of research had already revealed: Nearly 80% of the surveyed kids had been exposed to multiple and/or prolonged interpersonal trauma, and of those, fewer than 25% met the diagnostic criteria for Post-Traumatic Stress Disorder (PTSD).

Instead, these children showed pervasive, complex, often extreme, and sometimes contradictory patterns of emotional and physiological dysregulation. Their moods and feelings could be all over the place—rage, aggressiveness, deep sadness, fear, withdrawal, detachment and flatness, and dissociation—and when upset, they could neither calm themselves down nor describe what they were feeling.

In 2005, the complex trauma task force—chaired by van der Kolk—began working in earnest on constructing a new diagnosis, called Developmental Trauma Disorder, which, they hoped, would capture the multifaceted reality experienced by chronically abused children and adolescents.

In January 2009, they submitted to the Diagnostic and Statistical Manual (DSM) Trauma, PTSD, and Dissociative Disorders Subwork Group an elaborate criteria set (DSM-speak for symptom list) for Developmental Trauma Disorder: Exposure to prolonged trauma, causing pervasive impairments of psychobiological dysregulation (of emotions and bodily functions, of awareness and sensations, of attention and behavior, of their sense of self and their relationships), as well as at least two symptoms of standard PTSD, and multiple functional impairments (with school, family, peer group, the law, health, and jobs or job training).

According to van der Kolk, the DSM committee responded that the complex trauma task force had “inundated” them with too much data about Developmental Trauma Disorder, but not the right kind: They needed to submit other kinds of data concerning 17 issues, including possible genetic transmission, environmental risk factors, temperamental antecedents, bio-markers, familial patterns, treatment response, and so on.

The DSM subcommittee, chaired by Matthew Friedman, executive director of the National Center for PTSD, wrote that “the consensus is that is it unlikely that Developmental Trauma Disorder can be included in the main part of DSM-5 in its present form because of the current lack of evidence in support of the diagnosis and the lack of prospective testing of your proposed diagnostic criteria.”

The complex trauma task force argued that this was a proposed diagnosis, which didn’t officially exist yet, and so—in that great Catch-22 tradition of DSM—couldn’t qualify for the funding for the kind of research the DSM subcommittee wanted to see. But their argument was still unconvincing.

Though temporarily stymied, the NCTSN task force is by no means defeated. They’ve been able to raise the money for a Developmental Trauma Disorder field trial and enlisted the sites that are able to carry out the required research.

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10 Comments

Thursday, November 21, 2013 10:50:11 PM | posted by First Name Last Name

What was age range of the 1700 children and adolescents ??

Friday, November 22, 2013 2:50:40 AM | posted by JOHN BURIK

Yet another reason for ending the incestuous relationship between psychology and other mental health disciplines and the medical model!

Friday, November 22, 2013 4:04:15 PM | posted by sylviam

Congratulations on obtaining the money for the money for a Developmental Trauma Disorder field trial. Having recently read the article about DTD your work is very important to those who suffer from what until now has not been recognised.

Friday, November 22, 2013 4:27:15 PM | posted by suec2

I'm looking forward to hearing more about this. I see lots of this kind of trauma with kids who have medi-cal (medicaid) as insurance, but without a DSM diagnosis, they do not meet "medical necessity" and thus there is no funding to pay for services.

Saturday, November 23, 2013 4:53:41 AM | posted by Lisa Volk

It must be so disheartening to hear that rejection of what seems to me (as one working w/children and families) to be a diagnosis long overdue and so gut-wrenchingly obvious. I've spent my whole career with the DSM IV; some of the changes represented in the DSM V seem wrong on a gut and day to day experiential level. The proposed change above, which seems so right on so many levels, is rejected!Kudos to the team(s) soldiering on to prove: " Yes, this IS so." We must do something for these innocent kids whose lives are being destroyed while we argue the details.

Monday, November 25, 2013 9:18:15 PM | posted by Irene Werth

I have so wanted this kind of diagnosis for a long time, kids that don't fit PTSD, bipolar or depression disorders, but defintely have been traumatized and can not control their emotions

Tuesday, December 17, 2013 10:20:26 PM | posted by daisys

Thank you! MSW for this update on Developmental Trauma. Ever since the 2012 TIME article on the DSM, which breathed not a word on DTD, it was clear it wouldn't make the DSM-5. And so I still can't see a doctor. Why? Because my mother verbally assaulted me at least twice a day at mealtimes, forcing me to drink milk although I had lactose intolerance. Not surprisingly I have a severe digestive/assimilative disorder. I can't tell a PCP about it and how it affects my ability to take medicine because officially it "doesn't exist". Anecdotal evidence is the stuff that can be found everywhere you turn.